The Tyrosinemia Pal was developed to help families in the
management of tyrosinemia.
It is divided into sections to help keep papers, appointments,
and other information organized. Each section begins with a short introduction
that describes its purpose and suggests information that could be added.
Many families find it helpful to take their Tyrosinemia Pal to medical
appointments. That way, all necessary information is in one place.
The Tyrosinemia Pal was developed through a grant from Rare
Disease Therapeutics and is distributed to families of children with tyrosinemia.
Download the Tyrosinemia Pal below.
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Table
of contents
Introductory
letter
About
tyrosinemia, type 1
Things
to do
Advice
from other parents who have children with tyrosinemia
Introduction
New
parents' guide
Tyrosinemia
The
genetics of tyrosinemia, type 1
Your
guide to tyrosinemia
Frequently
asked questions about tyrosinemia
Managment
guidelines
Tyrosinemia
and the self-management timeline
Evaluating
medical information: a guide to websites
Resources
Introduction
Medical
management of tyrosinemia
Laboratory
monitoring
Introduction
Tools
and equipment
Formula
facts
Formula
intake record sheets
How
to keep a food record
Diet
record sheets
Finger
foods are fun
Finger food suggestions and recipes
Look-alike
foods
Babysitter's
guide to tyrosinemia
Introduction
Tyrosinemia-related
lab work/tests/procedures
Other
lab work/tests/procedures
Health
care provider information
Nitisinone
enrollment form
Nitisinone
order form
Appointment
log
Insurance
information
Medical
expenses
Emergency
contact information
Immunization
record
Recommended
childhood immunization schedule
Growth
records and link to growth
charts
Transitions
- looking ahead
Transition
timeline for tyrosinemia and introduction
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